«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
There is a range of studies that explored lay diabetes beliefs more generally, such as Chowdhury, Helman and Greenhalgh (2000) that conducted interviews with forty first-generation immigrants in order to explore dietary classifications in British Bangladeshi. Respondents tended to distinguish their food in “strong/weak” and “digestable/indigestible”, rather than an expected South Asian dichotomy of “hot/cold”, or a biomedical classification in carbohydrates, proteins and fats. Mull and Mull (2001) investigated diabetes beliefs among 38 US Vietnamese migrants with diabetes and their families. Participants largely believed that a diabetic body was considered “hot” that required treatment by “cooling” herbal remedies rather than equally “hot” insulin injections and called for culturally-sensitive healthcare.
Indeed most of these studies conclude that health professionals should take such “cultural” particularities into account and provide more culturally adequate or sensitive care. Polzer and Miles (2007) concluded from their study with African Americans with diabetes that their spirituality was part of their “rich cultural heritage” that such provided support in self-management but could also eliminate responsibilities for self-management. Chesla and Chun (2005) suggested in their study on the importance of social relations in diabetes self-care among Chinese American families that healthcare should acknowledge social negotiations of illness management and, for example, consider family counselling. The notion of “culture” in many of such studies is borrowed from disciplines such as medical anthropology (lay beliefs and folk illness, e.g. Helman 2001; explanatory models, Kleinman 1980) and trans-cultural psychology (concepts such as acculturation, e.g. Berry 1994).
Medical anthropologists view such literature sceptically; mainly as such borrowed concepts and a simplistic understanding of culture are largely considered outdated.
However, while these studies may not contribute to the understanding of “culture”, they seem to serve to broaden the perspective of health professionals in which ways patient perspectives need to be taken into consideration. From an anthropological perspective, these studies also provide an insight into the health service’s “culture” of individualised prevention and risk and in which way they “cope” with those who do not share their perspective.
Much of the above reviewed health research aims to understand the complexity of diabetes self-management in order to improve patient education interventions. Diabetes education provides the context where patient can learn how to self-mange their diabetes but also where their perspectives can be addressed, understood, perhaps respected and taken into account, where patients could be empowered. Patient education is an essential part of diabetes care (Day 2004). It is said that the first diabetes education programme was introduced in Portugal in the early 20th century by a Dr. Roma, while in Britain, Dr. R.D. Lawrence, the pioneer of British insulin care – and first British recipient of insulin – highlighted the importance of education in order to develop skills but also to adjust well to living with diabetes (ibid. 1599). Many studies show the efficacy of diabetes education in decreasing complication rates, while others point out that one-off courses or short interventions have little value (ibid. 1600). In Germany, every patient with diabetes is entitled to these services, as much as they are entitled to patient education sessions, and those doctors who cannot provide their patients with sessions themselves can refer them to diabetes practices or clinics. This generous availability and access to education sessions, however, exists only on paper for some patients. As it will be investigated in this thesis, during my fieldwork I experienced that structurally disadvantaged patients might not be aware of education sessions, (busy) doctors are reluctant to refer patients outside their practice, and above all, only few education sessions are offered in other languages or incorporate other food cultures. (The latter seems to call for “cultural sensitivity” in patient education.) Self-management becomes an impossible task without the necessary knowledge on how to do it (see Chapter 4). International efforts for diabetes care often concentrate (besides distributing insulin) on making such education sessions – in theory very low cost interventions – available to everyone. At the 2006 World Diabetes Congress in Cape Town, a Mexican public health practitioner introduced a scheme to bring education session to remote rural areas; another presentation explained how “training-thetrainer” programmes were rolled out in the Caribbean.
In summary, in this chapter I have outlined why the study of diabetes is complex, timely, and can be a fruitful endeavour for anthropologists. Health research provides us with a plethora of examples that diabetes management is a challenging task for patients and experienced in the everyday. Two issues seem particularly relevant for this thesis. Several studies describe patients’ individual strategies of self-care and “cheating” that can be more than a transgression but a skilful tinkering with health advice in order to manage everyday lives (Kelleher 1988; Murphy and Kinmonth 1995; O’Conner et al. 1997; Thorne et al. 2003; and Campbell et al. 2003 in their “ethnographic meta-analysis”). Furthermore, some health literature explores how minority patient groups may perceive and experience diabetes unanticipated by health professionals. Health research approaches such research with a set of research objectives that aims to improve healthcare and ultimately adherence of patients to their healthcare strategies, uses interviews and focus groups as their main research methodology and tends to analyse data deductively. Social anthropologists may not agree with the often deductive research design of such studies that aim for generalisation and applicability and may limit responses and avenues of explorations of such emotional and bodily experiences.8 Social anthropologists seem to be well placed to provide a more detailed and “thick description” (Geertz 1973) of patient experiences with diabetes self-management but diabetes ethnographies are scarce (cf.
Ferzacca 2000). In regards to the above mentioned two issues raised in health science literature, this thesis will provide an ethnographic account of individual strategic
8 For a longer discussion on ethnographic research methods see Chapter 2.3.
practices of self-care, perhaps similar to what Thorne et al. (2003: 1345) called “calculated cheating”, and describe this as tactics of diabetes care. This is also an ethnographic exploration of how Turkish migrants with diabetes have to actively negotiate self-management advice in order to make it relevant in their social lives (as such health services studies and intervention programmes targeted at migrant diabetes groups are missing in Germany). As this anthropological, ethnographic research project set out to broadly investigate Turkish immigrants’ individual and communal experiences with diabetes, it goes beyond the above summarised body of literature on diabetes self-care experiences and, looking at communal responses to diabetes, demonstrates how practices, experiences and politics are intrinsically linked. However, although the project thus did not set out to foremost contribute to the above body of literature, the thesis’ ethnographic accounts, not only of individual practices of diabetes self-management but also the explorations of social, economic and political diabetes experiences relevant to the research participants, may be of interest to health service researchers and providers.
1.2 Turkish migrants in Germany
I mentioned earlier that the assumption that Turkish-origin Germans suffer from significantly higher diabetes rates than the rest of the population hinges on one study (Laube et al. 2001). The study is quite controversial, mainly as its result was reported to reveal that Turkish-origin Germans are almost twice as likely to suffer from diabetes as Germans or Turks in Turkey (Gieβener Anzeiger 2006); but the study outcomes are far more complex and not every finding reflects the above claim. Due to recruitment in mosques, Turkish clubs and the Turkish consulate in Frankfurt, elderly male participants are over-represented in this study, while the Turkish-origin population in Germany is generally very young and with males and females equally distributed (Goldberg et al. 2004: 17). Such representation biases – here in terms of age and sex – are not uncommon but need to be controlled for during analysis. The study did this in three different ways, adjusting the data set for the general age distribution in Turkey, the Turkish migrant population in Germany, and finally for the general German age distribution. Only this latter version, adjusting the sample of Turkish elderly men to Germany’s average age distribution, reveals these high diabetes rates for Turkish migrants compared to the German or Turkish population.
This is a valid method of handling such data but the research can nonetheless be criticised for its initial recruitment biases and that it is not a population based study that may reveal sounder data. The research team – mainly Turkish-origin academics – highlighted that they aimed to alert to the high diabetes rates among the Turkishorigin elderly. These findings represent the worries of many of their (also mainly Turkish-origin) colleagues that report such prevalence in their daily practice. The result that would control the data set for the very young Turkish migrant population group, in contrast, may misrepresent the diabetes problem, and, in the opinion of many health professionals I met, high rates of obesity among these young should ring alarm bells for future illness rates anyway.
The obvious redemption for this contested study would be further research that took such concerns into account. However, there is hardly any epidemiological data on health among minority Germans, unlike other countries, for example the UK, that produce frequent studies on their minority population groups (e.g. Agyemang and Bhopal 2002; Hayes et al. 2002; Pollard et al. 2008). This dearth in German epidemiological data seems quite remarkable considering that people of Turkish origin constitute the biggest minority group in Germany. I suggest that this research vacuum represents a more general national indifference towards the particularities and needs of a minority group that is, despite opposition, well established and formative in German society. The following chapter will give an introduction to Turkish migrant lives in German today, their everyday lives and public image. It then gives a brief overview of the history of Turkish migration to Germany, and finally aims to address issues of social provision that should form the context to this thesis.
Turks in Germany today: everyday lives and public image Let me start with an incident that happened before embarking on the field work for this thesis. On 30 March 2006, Germans read in their newspapers (any newspaper really; I refer to Süddeutsche Zeitung 2006a, 2006b, 2006c, 2006d) about a group of teachers in Berlin’s district Neukölln who could no longer cope with the disobedience, chaos and violence at their school and decided to publish a letter about their unbearable situation, a “cry for help” as newspapers quickly called it.
Neukölln is one of the most multi-ethnic and socially deprived districts in Berlin.
Frequent media reports about this area dwell on stories of crime and violence such as “honour killings” and “clan feuds”. At the centre of this news story was the Rütlischool which belongs to Germany’s education system’s lowest type of high school, Hauptschule, with pupils leaving after nine years of school education and (if at all) the lowest high school degree obtainable in Germany. This stratified education system has increasingly been criticised and Hauptschulen are often portrayed in the media as breeding grounds of violence and social welfare recipients rather than sites of education. The teachers’ letter of the Rütli-school, of which a majority of pupils are from migrant backgrounds, sparked a media frenzy that revived these public debates. Politicians hastily commented on both immigration and education legislation, and the bleak state of Germany’s society burdened with failed integration and youth with no future perspectives. Over the course of several days, media assembled at the gates of Rütli-school, filming agitated (and amused) male youths who enjoyed brief fame showing their knives and shouting cynically “Terror!” and “Let’s kill some teachers!” The media coverage also captured images of intimidated veiled girls that tried to hide from the cameras diligently pointed at their school grounds. More newspaper articles appeared that reported how journalists allegedly paid those teenagers for “a good show” while others moved on to general debates on ghettoisation and Fremdenland (“foreign land”) in the neighbourhood (Süddeutsche Zeitung 2006c). The pupils of the school found their own way of dealing with this new publicity. Youth in Neukölln can now be found wearing t-shirts with the simple logo Rütli. With the help and inspiration of three fashion students, Rütli pupils are reclaiming their label in a positive way, and there are plans for an extended fashion project during art lessons (Der Spiegel 2006).
This media incident – as it is not the actual events at that school but the consecutive media attention that it sparked which is of interest – resonate with an ethnography on Sikh asylum seekers in Germany (Nijhawan, in Ecks and Sax 2005).
Nijhawan argues in his account “that the migrants’ marginality in everyday life does not mean that they are at the margins of public discourse” (Ecks and Sax 2005: 207).